Nunez Family Is Winning Battle with Rare Disorder

A Palisades mother and her two sons survive, thanks to pioneering approaches by UCLA neurosurgeons

On a weekday afternoon, the Nunez household buzzes with the energy of young brothers Noah, 11, and Diego, 5. They duel with plastic swords and create other havoc while inciting the frenzy of their adoring fans, Doug and Wilbur, the family’s pet pugs. Meanwhile, Lisa D’Andrea Nunez, their mother, a radiant woman who exudes Zen-like calm, brings order to the merry chaos. However typical this domestic scene appears, the family’s history is anything but average, with life-threatening medical crises consuming their life for more than a decade. The ordeal begins in 1995 when Noah, just 3′ weeks old, cried out and then slumped into unconsciousness. At the time, Lisa was busy unpacking boxes. It was day two for her and her husband, Emanuel Nunez, in their new Mediterranean-style residence at the top of Bienveneda, where they still live. ‘I had just nursed Noah and he was in the arms of my mother-in-law in the next room,’ Lisa recalls. ‘My three-week-old experience as a mother said ‘Hmm, that cry doesn’t sound right.” The new mother was right. Her infant son’s face had turned blue and he had stopped breathing. She immediately administered CPR. Once stabilized, Noah was transferred to a local emergency room and after a battery of inconclusive tests, a spinal tap was recommended. Lisa needed to choose a hospital: Cedars-Sinai or UCLA. Her husband, an agent with Creative Artists Agency, called Michael Ovitz, the powerhouse former head of CAA who was Nunez’s boss at the time. Ovitz had just donated many millions to UCLA, so the answer was clear about where to seek treatment. Little did the Nunez family know how major and long-term their connection to the UCLA Medical Center would become. Noah was diagnosed as having multiple arteriovenous malformations (AVMs) in his brain. An AVM is an abnormal collection of blood vessels; blood from arteries in the brain flows directly into draining veins without the normal capillaries in between. Present at birth, AVMs are rare, appearing in less than 0.14 percent of the U.S. population. The risk of hemorrhage is the main medical concern, with about one-quarter of AVMs bleeding by age 15. In Noah’s case, six simultaneous hemorrhages had occurred in his three-week-old brain. Catheters were used to place tiny coils at each site to stem the bleeding before Dr. Neil Martin, chief of neurosurgery, surgically removed and cauterized all the bleeds, a 13-hour procedure involving a team of 15 doctors. Noah’s chances of survival, much less leading a happy life, were slim. After the surgery, Lisa remembers asking one of the doctors if when they had entered the hospital they were in a deep forest, where were they now, had they reached the meadow? ‘His response was that the trees had cleared but we have a very long way to go,’ she says. ‘When we took him home, we had no idea what we were up against,’ Lisa recalls. ‘Prior to having Noah, I had been with Hugo Boss menswear doing celebrity wardrobing and product placement. I traveled to New York three or four times a year and all over the country to film festivals with my husband, who is an agent. It was a very different life we had been leading. ‘In time, it became a situation where I had to choose between playing with my kid on the floor and making sure he was getting proper therapies or rushing into Beverly Hills to make sure ‘so and so’ had the right suit for his TV appearance,’ she says with a touch of sarcasm. ‘I let the wardrobing thing go before he was three.’ Lisa says there was not a lot they could do until Noah started passing developmental milestones. They had been told that he might have a clutched left hand, walk with a limp, be partially blind in both eyes and have a compromised sense of touch. ‘As time went on, most of these things did not occur,’ she says. Noah defied all the odds. Today, he is an outgoing fifth grader at Marquez Charter Elementary who runs, surfs, plays tennis, writes, reads and has lots of friends. Upon learning that AVMs were common to a family genetic disorder called Hereditary Hemorrhagic Telangiectasia, or HHT, Lisa had tests conducted in the months following Noah’s treatment and discovered she had her own brain AVM, one that was large and dangerous. Over the course of seven years, she underwent several interventional procedures and rounds of radiation therapy at UCLA before the mass was finally fully addressed and the potential danger eliminated. Despite HHT being a hereditary disorder (an abnormal gene on either chromosome 9 or 12 causes most cases), the condition manifests itself in many different ways. Ninety percent of people with the gene get nosebleeds, another 30 percent end up with an AVM in their lungs; there’s only a 10 percent chance of having an AVM develop in the brain and just a 3 percent chance it will hemorrhage. Often carriers of HHT have no symptoms. Each child of a parent with an HHT gene has a 50 percent chance of inheriting this abnormal gene. The Nunez’s second son, Diego, was born in 2002, during a time when Lisa continued to battle her own AVM issues. Even though the chances of this child having brain AVMs were minuscule, she insisted on giving birth to Diego at UCLA as an extra precaution. Following her maternal instincts made sense. An MRI of the days-old Diego showed he indeed had AVMs, one of which had hemorrhaged in utero. At 10 days old, the infant underwent brain surgery to remove the hematoma and resect the vascular malformation. At 2′, he became one of the youngest patients to undergo stereotactic radiosurgery for the remaining AVMs to prevent future bleeds. Stereotactic radiosurgery uses sophisticated 3-D computerized imaging to precisely target a narrow X-ray beam and deliver a high concentrated dose of radiation to the affected area. Stereotactic radiosurgery is not surgery in the conventional sense because there is no incision involved. Diego is now a happy, healthy 5-year-old who attends Crossroads and loves everything to do with ‘Star Wars’ and ‘Pirates of the Caribbean.’ An 11-year involvement with the neurosurgery team at UCLA gave the Nunezes status as an extended family of the hospital. When asked by Dr. Martin, Lisa jumped at the chance to join the division’s advisory board several years ago and chaired the organizing committee for the division’s first Visionary fundraising ball in 2005. She will tell her story at the 2007 Visionary Ball, taking place tonight. A commissioned ‘patient portrait’ photograph, a tradition for the Visionary Ball, features the Nunez brothers this year. It will hang in the new neurosurgery wing of UCLA’s ‘Hospital of the Future,’ the Ronald Reagan UCLA Medical Center, when it opens next spring.